The Fight Continues: Update - 8 Months Post Last Surgery

[SimplyDeeDee]

It’s been a while since my last post but I am still here fighting the fight for my health and well-being.

8 months since my last surgery and I am still having a lot of problems with my abdomen, pelvic and bowels.

Walking at times is very difficult, I’ve lost a considerable amount of weight and I still can’t eat properly. My mental health has also taken a hammering this month; I’ve been feeling that I just can’t fight anymore and I can’t blame this on COVID.

Like some other sufferers of Endo, time inside during lockdown was normal. Normal in the sense that my problems still persisted but I continued to research and exercise when I was able to.

I continued working with local charities remotely only more focused on the relief effort rather than the general agenda.

Medical came to a holt, ingredients for my diet was an issue at times and getting my medication also became a bit difficult.

One thing I made sure of was to spend the time with family so I wasn’t so isolated and they were able to help me when needed; I’m so thankful for that.

My consultant and department checked in on me a couple of times which I was surprised about due to the extreme pressure the NHS has been under. I’m very grateful for that and to know they we’re safe.

Recently my research has lead me towards SIBO (Small Intestinal Bacteria Overgrowth)

It’s never been mentioned to me before but after reading about the symptom for the two types, I believe I’m on the right path and so I’m trusting my gut instincts. It has been linked with deep infiltrated endometriosis affecting the bowels.

I’ve seen a gastroenterologist in the past and she was useless. No examination just oh I see you have stage 4 Endometriosis that’s your issue, now on yer bike.

It’s been a constant game of ping pong trying to see another gastroenterologist with unanswered letters and emails from my GP to the hospital department. I’ve tried myself to follow up and gotten nowhere and then everything went on lockdown.

I’d like to hear for others who have endometriosis and have also been diagnosed with SIBO - how and where were you tested, how do you manage your diet, medication and what effective treatments you are on.

My brain is still ticking with research so anything you can share will put me in a better position to firm my request and continue the fight for answers and treatment.

Thank you in advance and hopefully I haven’t sent you to sleep with my rambling 💛

[Moon_maiden]

I’ve looked at that but not convinced. There isn’t much they can, probiotics are good to take anyway and recommend. There is a test they can do, worth speaking to GP. What about referral to endo specialist, they’ll know about the bowel issues?

[SimplyDeeDee in reply to Moon_maiden]

It’s a exhausting trying to find out what the issues is, it’s an endless road. I’m already under an Endo and bowel specialists however there is a road block at the moment.

[Moon_maiden in reply to SimplyDeeDee]

It can get exhausting at times. What’s the road block, covid or more specific to you?

I looked up the price of the test a few weeks ago, around £160, thought it was a bit pricey.

[SimplyDeeDee in reply to Moon_maiden]

Figuring out what the issue is, I don’t really want to be tested through the GP if possible that process is way too long especially with Covid. I’m still waiting on Physiotherapy not even that has started.

I’m looking for advise from anyone with endometriosis that may have the condition, how and where were tested (North London/ london). A home kit which you send of for analysis are not accurate.

[Moon_maiden in reply to SimplyDeeDee]

The home kit I mentioned was for the SIBO, sorry I didn’t explain that very well.

The only real way for endo diagnosis is laparoscopy. In really competent hands endo can be seen on ultrasound, but mainly not and MRI can show deep endo, not superficial.

I was lucky, the consultant I saw was experienced and although I’d gone to talk about fibroids, he was sure it was endo. I’m on the Hampshire/Surrey border. I had lap in Feb, which confirmed diagnosis, but a greater extent than he thought. Now waiting further op.

What does your gynae say about it all?

[SimplyDeeDee in reply to Moon_maiden]

Thanks for your reply but I think you’re confused. I know all about Endo having suffered with it for many years and surgeries, last one being December - stage 4. My post is about SIBO and the connection to Endo as written above. There are other ways of being tested for SIBO other than a home kit; centres in London. I’m hoping someone with both can offer some advise on where and anything else that maybe useful.

Hope your op goes well when it comes round and your recovery is as comfortable as possible 😊

[plotments in reply to SimplyDeeDee]

This was one of the many tests I had while under the gastro team before I went back to gynae...diagnosed with bowel endo....It was a breath test done at my local hospital.....Had to drink something then every 20 mins had to blow into a machine The results came back normal.

I've been using probiotic tablets Acidophilus for a while on and off to see if it helps with bowel symptoms related to endo they do help with your gut health especially if you've had to be on antibiotics.